The only thing I used to know about hepatitis is that there are different ones. It was only when I was diagnosed with hepatitis C that I found out just how much damage it can do. I had stage 3 kidney failure, decompensated cirrhosis and was about to be put forward for a liver transplant, but thanks to a good consultant and looking after myself, I pulled through. I am now on four-monthly check-ups and my liver is recovering.

I’m sharing my story to raise awareness of the virus and how easy it is to get tested and treated. If people were diagnosed earlier, it would save their livers and NHS resources. All it takes is a finger-prick test at home which you send off for the results. If you’re positive, the treatment is a course of tablets. Otherwise, you might not know you have hepatitis C until you get the same severe symptoms I did.

With the amount of damage that’s been done to my liver my consultant thinks I’ve had hepatitis C for a lot of years. I’ve never touched drugs or put needles in me, but I might have been infected through a blood transfusion nearly 40 years ago. Unfortunately, the medical records from that time were destroyed in 2011, so I’ll never know.

Specialist referral

For two years before I was diagnosed my weight had been going up and down, I had mild depression, no energy, back ache and shortness of breath. Because of my age I thought it was the menopause. However, within the space of a few days in July 2024 my clothes became so tight that I couldn’t get them on at all, then overnight I went from 58 to 64 kilos.

My GP suggested a load of blood tests and rang me shortly after saying: “There’s something really wrong with your liver and kidneys.” A cancer blood test came back really high too and I was referred to a specialist for a bowel obstruction.

I had the consultation within 10 days and was sent for more blood tests. My bowel test results were normal, but my stomach was still swollen. I was admitted to the medical assessment ward for yet more tests, then the surgical ward where they took 5.5 litres of fluid off my stomach and finally the liver ward. They asked if they could do HIV tests and I said if you can find out what’s wrong with me, I’ll have every test.

My consultant was getting me ready for a liver transplant assessment, but in the meantime I was put on a 12-week course of tablets

It turned out to be hepatitis C and as well as decompensated cirrhosis and kidney failure I also had a blood condition called cryoglobulinemia, which made my fingers and toes cold. Because my liver wasn’t working, I had malnutrition and multifactorial anaemia and my sodium levels were going downhill.

My consultant was getting me ready for a liver transplant assessment, but in the meantime I was put on a 12-week course of tablets after which I would have to wait another 12 weeks for a final blood test to see if they had cleared the virus. I was also prescribed water tablets for the ascites, but they made me really ill so I had to stop taking them.

There were British Liver Trust posters at the hospital and I read their booklets cover-to-cover – they answered all my questions about hep C. Until I read them I didn’t know how much the liver does and how important it is to keep you alive.

Before being discharged I was given a dietary plan and told no salt and only 1,500mls of fluid a day. I also couldn’t drink alcohol again. I didn’t want to anyway – I’d last had one two weeks before diagnosis.

Hep C had gone

There were no side-effects to the tablets for the hep C and my last drain was 11th November 2024. I had another one booked for December but hadn’t put enough weight on because the fluid wasn’t coming back. A scan in February 2025 showed there was little fluid and although my liver was still small, I no longer need a transplant. My kidney function is now back to normal and thanks to a healthy diet and looking after myself, further tests in March showed the hep C had gone and they’re keeping an eye on my blood. My husband says I look so healthy now.

I wasn’t really stigmatised by anyone, it was more of a feeling I had because I think a lot of people don’t really understand what hepatitis is. At first I was worried about having my grandchildren because of blood-to-blood exposure, just in case I cut myself. And how far should I go in explaining it to people – should I tell my hairdresser? In the end, I decided not to, and just waited until I was clear of the virus instead.

I’m quite a bubbly person and look forwards rather than backwards – I was infected with hep C and I’ve got to just face it, because when you look like you’re pregnant with triplets, life’s got to get better. If you’ve been diagnosed with hep C, be positive. There’s always light at the end of the tunnel – and there are that many things to cure you these days, so be aware of your condition, don’t hide away and pretend it’s not there.

The post Joan’s story: “If people were diagnosed earlier with hepatitis C, it would save their livers and NHS resources” appeared first on British Liver Trust.

Forty years ago Alastair received contaminated blood following a road traffic accident overseas. He was diagnosed with hepatitis C and took part in a variety of medical trials and treatments over the intervening years. He was diagnosed with liver cancer in November 2023. Thank you for sharing your story, Alastair

On 24th April 1981 I was working overseas when the vehicle I was being driven in was involved in a road traffic accident. The vehicle flipped five times and I was flipped out of the car and ended up underneath the back wheel. I punctured a lung, broke my collarbone and pelvis and had a huge burn across my back. I was in hospital for five weeks before being flown back to the UK on a stretcher. While the UK hospital was preparing me for a skin graft, they realised I’d received contaminated blood overseas and I was diagnosed with a hepatitis virus which was later confirmed as hepatitis C. I was told I would probably have problems in about 30 years’ time.

I took up a legal case, but it was thrown out by the court – it was hard to know who to sue as there were so many different offices involved in my employment.

Over the years I was monitored by the NHS and went through all the medical trials, including Interferon and Ribavirin, as they tried to figure out how to control hepatitis C. I understand the treatment now is a three-month course of pills, but when I was going through it I had to inject myself in the stomach for a year at a time. Eventually Boceprevir got rid of the hepatitis C but my immune system was down to zero a lot of that time.

Elevated cancer risk

The decline in my liver was very gradual over the next 30 years and I was always open with my employers about the hepatitis C and how I got it. However, the acceptance was not great and they weren’t particularly sympathetic when I had to take time off for treatment.

Because there was an elevated risk of me getting liver cancer, I received liver scans every six months so it could be spotted early and treated. In 2022 I was told I would probably live another 20 years, but then everything changed. A cancer nodule was discovered on my liver in November 2023 and I went through an ablation where they basically burn the nodule out, but it had grown quite a bit. The ablation was successful, however in the meantime I developed secondary cancers. I was expecting to get chemotherapy, but because the cirrhosis has caused problems with the blood supply (thrombosis) to the superior mesenteric vein and the portal vein, they had to keep my blood diluted with anticoagulant medication. Chemotherapy starves oxygen to the tumour and it kills it off, but it can’t do that if the blood’s thinner. The portal vein has not improved with anti-coagulation however the doctors don’t want to risk clots moving.

I’m now starting immunotherapy (Atezolizumab (HCC)) which won’t cure the cancer just delay everything by a month or two.

I was able to do fairly physical stuff until January 2024, but it’s gone downhill rapidly since then. In July 2024 the oncologist told me in a very matter-of-fact way that I had six to nine months (median). I’d been expecting it for 40 years, so it wasn’t a particular surprise – my wife was more shocked than I was. I’m now starting immunotherapy (Atezolizumab (HCC)) which won’t cure the cancer just delay everything by a month or two, although I don’t know if it’s six months from the start of the immunotherapy or six months from when the oncologist spoke to me.

I’m not in pain and, apart from lack of energy, I don’t have any symptoms. However, because I’ve got poor circulation and my blood is thin, if I walk too far my ankles swell up and my feet hurt so I lie in a reclining chair and watch telly.

NHS monitoring 

The NHS has been very good – they’ve been monitoring me for over 40 years and have done what they can. Worrying about it won’t change anything, so I just deal with it. I’m now sorting out all the ‘sadmin’ as they call it including Macmillan nurses and have also registered with a hospice. My wife and I have been offered counselling, but it’s not required yet.

I was infected with hepatitis C through contaminated blood and didn’t know I had it until I had a blood test, but it’s important that people who use drugs intravenously are aware they can get it from sharing needles too. I would urge everyone who suspects they might be concerned to get checked out as soon as possible. Then at least you’re in the queue to get it diagnosed and be treated.

I’ve spent a lot of time on a liver ward and many patients are there because of alcohol use. Alcohol is a social thing and it’s everywhere on television, but if people spent a day on a liver ward it would be such a wake-up call and they would never touch alcohol again. The same can be said about non-prescription drugs.

The post Alastair’s story: “I went through all the medical trials, including Interferon and Ribavirin, as they tried to figure out how to control hepatitis C” appeared first on British Liver Trust.

I found out I had Hepatitis C in 2011. I had never heard of it. This came completely out of the blue, with no symptoms other than an occasional pain under my ribs on the right-hand side which led me to make an appointment with my GP. Gallbladder stones were initially suspected but not found. No one knows when I was infected or how. I didn’t fit the usual profile – intravenous drug taking, blood transfusions, dental or surgical treatment abroad.

I was referred to the local hospital to meet the hepatitis nurse. She went through a kind of flipchart explaining the functions of the liver.  The illustrations made it look like a children’s book. Then she told me about the treatment, six months of drug treatment that would probably make me feel very unwell.  I asked if there were support groups or people I could talk to. She replied that I probably wouldn’t find that helpful. Then she asked me when I wanted to start the treatment. The whole thing was totally unreal. I felt completely at sea and desperately alone and could not answer her questions. I had retrained for four years into another profession following a very unexpected and traumatic divorce and had only been six months qualified into my job. This new job was my way up from the ashes of my previous life.

I decided to see a consultant privately at one of the centres of excellence for liver diseases. One of the first things he alluded to was the stigma surrounding this illness. The message was, in brief, to choose carefully who to disclose this to. I felt angered by this and even more alone.

Mild liver damage

My liver damage at this stage was mild and he gave me two options.  Get treated now with a high chance of clearing the virus but no certainly that I could continue with my job due to the side-effects or wait for a trial. Decisions again.  I chose the latter and attended yearly check-ups. During this time I tried to take control of the situation. I bought myself a juicer, cut out all alcohol (which wasn’t a hardship as I had never much liked the taste of it), tried to make my healthy diet even healthier, tried Chinese herbs and acupuncture.

A couple of years later, the hospital contacted me with details of two possible trials. Trying to weigh up the medical information, reading about the possible side-effects, some of which included death, and if they did not work having to fall back on the dreaded Ribavarin/Interferon cocktail was a complete nightmare. Such was my need for reassurance and certainty that I even tried to explain the pros and cons of one trial over the other to my eldest daughter, who of course was just as much as sea as I was.

I discussed it too with the consultant heading the trials. This was traumatic in itself as he did not seem able to tolerate my anxiety and indecision. In the end he made the decision for me. There were other trials coming up much shorter treatments and without Interferon and we agreed to wait for this. In January 2015 I became patient zero of a 12-week trial for Genotype 3 patients with cirrhosis who had not previously been treated. By this time, my fibrosis had developed into an early stage of cirrhosis. There were further complications as different labs came up with different analysis of my genotype. More stress, more anxiety but also first-class treatment and support from the trials team. In the end the treatment started, my viral load dropped massively after a few days of treatment and I cleared the virus without having experienced any side effects from the medication.

I remarried in that same year, Hep C free.

A year later I became a grand-mother for the first time. As I cradled my grand-daughter’s perfect brand-new little body in my arms seconds after she was born I remember feeling so relieved that this horrible virus was no longer inside me.

Although the main threat had now gone away, a level of denial about what had happened remained. I did not initially take on board the full significance of the six-monthly appointments at the hospital for scans and blood tests, that is, liver cancer surveillance.  As time went on I came to accept that the sonographer’s words,” nothing has changed”, were the best news I could expect. The blood test results produced mixed feelings. Elation if my platelet count went up, disappointment if my cholesterol increased. My trust in my body had been strongly eroded. I became inhabited by a new sense of vulnerability and concerns about how my liver would cope in the face of other illnesses particularly those involving strong medications.

Minimal symptoms

Then in 2020, Covid came along. What did it mean for me? Before the first lockdown had been officially declared I decided to work entirely remotely. One of my six-monthly visits to the hospital fell at the end of March 2020. I need not have lost sleep at the thought of attending a usually bustling hospital during a pandemic. The place was like a ghost ship. I was the only person attending the out-patients liver clinic and, again, the only patient at the ultrasound department on that day. I was told that there were 300 patients with Covid at the hospital and advised to push doors open with my foot. Little was known then about the virus and my doctor’s parting words were simply- “don’t get it, we don’t know how your liver would cope”.

Whilst the same rules applied to everyone at the beginning of the pandemic, I felt that strong sense of isolation and aloneness again when relaxations were introduced and testing was no longer widespread. My difference was made visible again this time from a social point of view and although I tried to navigate this phase of the pandemic as reasonably and rationally as possible, for my sake and that of others, I sometimes felt their lack of understanding and resentment.

Despite the undeniable damage to my liver caused by the virus, my symptoms even before treatment were minimal and my high energy levels remained unchanged. What I hope to have shared through my story is the unseen emotional and psychological impact this illness had on me in different ways and through the course of external changing circumstances. Although this is rarely talked about, I suspect I am not alone in my experience. For those for whom it resonates, I hope they will find it helpful.

The post Veronique’s story: “My viral load dropped massively after a few days of treatment and I cleared the virus without any side effects” appeared first on British Liver Trust.

Although she’s worked in entertainment all her life, Sheryl was always quite shy so would have a drink before going on stage. When her brother tragically died, she began to drink more and had a mini breakdown. Since then she has tried rehab and, after being diagnosed with alcohol related liver disease, she was listed for transplant. However, her health then began to deteriorate and Sheryl is now receiving palliative care. Thank you so much for sharing your story with us, Sheryl. 

I loved singing and dancing from a young age and always knew I wanted to be on the stage. I had the talent to do it and it was my whole life from the age of 16. I was really lucky – I became an entertainer and travelled a lot, including Lebanon, Damascus, Cyprus and Italy. Las Vegas was my favourite – it was amazing and I worked there in a casino as an entertainer for six months.

Throughout my career I spent a lot of time in pubs and clubs and alcohol became my friend. It sneaks up on you. It was my go-to to make me feel better. When my brother tragically died, I couldn’t deal with the grief, so I pushed it down and pretended it hadn’t happened. This caused me to drink more and led to a mini breakdown. My partner couldn’t cope with the drinking and crying so I decided to move back to England to lick my wounds.

I have an amazing relationship with my mum and stayed with her in Bristol for six to eight months. My friends then started encouraging me to get back out there and sing again so I moved to Weymouth and worked there for 15 years.

Even though I was in entertainment, I was quite shy and withdrawn and would have a bottle of wine before I went on stage. The amount that I was drinking had gradually increased over the years until I was drinking around three bottles a day. I took myself to a drug and alcohol group where I had a two-week detox and worked with a lady who was so kind and caring. It wasn’t rehab, they just gave you two weeks then sent you back into the world again. I didn’t have the willpower then to stop drinking and didn’t feel equipped for what was to come. I felt I needed four months in rehab to get the help I needed to really address my problems, but didn’t get it.

I thought “I can beat this, I can stop” but it shocked me that I couldn’t.

My doctor asked “Do you know you have hepatitis C?”

In 2004 I went to see a doctor and after she’d run some blood tests, she said: “Did you know you have hepatitis C?” No, I didn’t and couldn’t think where I had got it from! More recently, I’ve thought about the eyeliner I had tattooed on in America years ago – maybe it came from there, which means I could have had it for 20 years, never realising my liver was being damaged. I was put on a drug that would clear the hep C and within three weeks it had gone. I took the medication for six months in total.

By 2014 my nose and gums were bleeding, I had pain in my stomach, my eyes were tinged yellow and I was shaking. I went to see my doctor and she was lovely and I went into another rehab again, but I just couldn’t do it, I couldn’t get away from drinking. It was a horrendous time as I was around people who were drinking and had gone into an abusive relationship. He was just feeding me alcohol so I asked my doctor to write a letter that I could show him saying that if I didn’t stop drinking my liver would pack up and I would die. I was trying to show him that this was serious, it wasn’t funny.

I felt I needed to be isolated from that environment, so went home to my mum. During lockdown I was drinking a lot more but managed to get hold of the Bristol Drug and Alcohol People and I started doing work with them. By 2021 I was jaundiced, my legs and stomach were swollen and I was totally malnourished. I was rushed into hospital where I stayed for two to three weeks. I was stunned and shocked when I was told I had cirrhosis and diagnosed with alcohol related liver disease. The hospital told me my pancreas was ruined too and I couldn’t have another drink.

The dietician, alcohol liaison nurse and liver nurse all worked with me and they were wonderful, but after eight months things hadn’t improved so a transplant was my next option. It was test after test, two or three times a week, and every time they found something else wrong with me. I was referred to King’s College Hospital for a four-day assessment – the doctors were all lovely and kind and I was listed for transplant at the end of 2021.

They called me in June 2022, whisked me to London in the ambulance and took me to ICU, all ready for transplant. However, after a right-hand catheter test, they decided they didn’t like the readings. I knew I had a weak valve in my heart and they were going to try me on different meds to help with it, but it didn’t work and made me really ill – my kidneys nearly packed up. I was taken off the transplant list, but in November 2022 they put me back on it. I then got fluid in my lungs and couldn’t get off the oxygen and my shortness of breath started.

My doctor looked crestfallen when he said: “Sheryl, I am so sorry; I have tried everything. I have spoken to every expert but unfortunately, we cannot go ahead with a transplant.”

I’d had enough, I wanted to go into a hospice. I fell into an encephalopathic state and into a coma.

My whole world crumbled. Everything I was fighting for and being positive for was just taken away from me. I sat there and didn’t know what to do. They sent me home, but nothing was in place to take care of me. That sent me on a downward spiral and I lost my dog Suki then too. I was then put into palliative care. I’d had enough, I wanted to go into a hospice. I fell into an encephalopathic state and into a coma.

My mum carries leaflets about hepatic encephalopathy in her handbag everywhere in case anything happens to me. It’s like her bible. That leaflet saved my life and helped my mum to explain what was wrong. The encephalopathy feels like going in and out of a world where you don’t know what is real and what isn’t. I saw visions and was off on some adventures in my head which entertained my friends. I wasn’t sure where I was. I could see my dog and my dad. I could see people at my funeral.

I recovered but was in hospital for about a month and then ended up going back in again. It’s all a bit confusing, but I think I was in hospital for nearly three months. I was then put onto a syringe driver and my nurse came in “I’ve never seen Sheryl this bad, I think we’re going to lose her.

My mum was told to prepare herself – she was devastated. My friends came up from Weymouth. I was in a lot of pain, but I woke up and heard a voice say “You are not a quitter”. Then a nurse came in and opened the curtains and let me see the nice sunny day.

Life can still go on and you will still be looked after even if a transplant is no longer an option

After recovering in hospital I decided I was going to be positive and go back to Weymouth, see my friends, see the sea and inspire others who are going through this. I want to enjoy the time I have left. Life can still go on. You will still be looked after even if a transplant is no longer an option.

I’ve now gone into a nursing place and it’s the most beautiful place you could ever imagine. It’s like a hotel. I’ve got my own room and can see the sea, have 24/7 care and my food cooked for me. I just can’t put into words how blessed I am, even though I know I’m here for palliative care and might not have long to live. And my mum can relax that I am being looked after.

If you are in a similar situation my advice would be don’t give up. Get in as early as possible and get diagnosed. Although it’s not easy, try to stay positive. Get as much help, advice, and knowledge as you can. Advocate for yourself, you never know what options are open to you. Make sure you are getting the care you deserve. Shout loud for it!

The British Liver Trust are brilliant – the nurse-led helpline has been brilliant to my mum too. I knew nothing about the liver or liver disease and found the Trust through Googling. Their leaflets are simple to understand and I started with their alcohol related support group, then the pre-transplant group and the hepatic encephalopathy group. There’s always a group for something.

I really enjoy the groups and have made so many friends who are lovely and so supportive. I didn’t say anything in my first few groups but over time my confidence grew. I remember donating £20 for the Craft a Bear campaign which opened up conversations with other people. You always find something to laugh about and come away feeling good and uplifted.

I want to thank Amy Cordwell, and everyone at the British Liver Trust.

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Amy Cordwell, the British Liver Trust’s Outreach Project Manager said: “We were deeply saddened to hear of Sheryl’s passing. She was a joy to know and her big character and bubbly personality meant she was loved by everyone.

“Sheryl was particularly kind and welcoming to new support group members who were nervous about attending for the first time. That meant a lot to them and it’s touching to see just how many people have reached out and shared their feelings about her since she died.

“No matter what happened, including the difficulties of being removed from the transplant list and going into palliative care, Sheryl remained upbeat and would always say: “Stay positive”. It was heart breaking when she said goodbye to the transplant support group for the last time, but she didn’t cry or get upset. She said: ‘It is what it is, but I’ve been privileged to come to this group and have made great friends here. People have supported me throughout my journey and I’m really going to miss everybody.’

“Sheryl made the world a better place just by being in it. She was a ray of light and we are all really blessed to have known her.”  

The post Sheryl’s story: “Alcohol sneaks up on you. I thought ‘I can beat this, I can stop’ and it shocked me that I couldn’t” appeared first on British Liver Trust.

The treatment was a complete success.

In the late 1990s, I had a fair idea I might have hepatitis C. I didn’t have any symptoms of liver disease, but as a drug injector in the 1980s, I was aware that I could be at risk. I was in denial for many years though, and brushed it under the carpet.

At that time there were treatments for the condition, but I’d heard they could have serious side effects and I didn’t want any treatment that could have an impact on my ability to work.

In 2006, I went for a test to see if I had the virus, but chickened out and never got the results.

I had a drug relapse from 2013 to 2015 and ended up moving from Glasgow to Wick in the north Highlands. The mental health nurse I was treated under mentioned the fact that hepatitis C treatments are much less of a nightmare for the patient and had a high success rate. She was a great nurse, as were her colleagues in Wick, and so I decided to go along with that particular treatment with a drug called Maviret.

I had a new job as a journalist which entailed me being very alert and able to supply news deadlines in time. I didn’t want to be laid low while trying to fulfill my employment obligations. When I started the Maviret I was really surprised how few side effects there were compared to what I had heard multiple times about other treatments. It was a complete success and I have cleared the hepatitis C from my system.

I am indebted to the NHS and the nurses who treated me at the hospital in Inverness. I also found the British Liver Trust website a useful source of information and I’ve shared my experiences with others in the charity’s online support groups. It’s a huge weight off my shoulders to know that I no longer have to worry about the ticking time bomb of hepatitis C.

The post David’s story: “I no longer have to worry about the ticking time bomb of hepatitis C.” appeared first on British Liver Trust.